This blog is dedicated to women with Hypopituitarism, aquired by Sheehan's Syndrome. Galvanizing, inspiring and empowering their journey to better health.

100 years and very little knowledge. What we do know is that our hormones need to be in balance. When there is an imbalance, crazy things can happen. Weight change, sleep disturbance, fatigue, concentration.

All these thing can wreak havoc on your life. Troubles in your relationships with loved once. Problems with your employer and your work habits. Changes in your personality. Depression. Anxiety. Changes in your immune system. Changes in how you react to and cope with stress in your life.

Sometimes, simply changing your eating habits can balance your hormones. Sometimes, correcting vitamin and mineral deficiencies can balance your hormones. Sometimes, both those fail and you you are still left with an imbalance. Proper testing can help identify hormone imbalance and proper treatment can bring the person back to their old self.

Why are they not doing something with this information? At least 2 million of our Veterans are needlessly suffering when treatment is available!!

Research shows about 24% of US Veterans who return home from war suffer from PTSD. (With 21.8 million veterans of the U.S. armed forces as of 2014, that means about 5.2 million Veterans suffer from PTSD.) Research shows 42% of those Veterans who come home with PTSD actually have Hypopituitarism, and when treated, their PTSD symptoms (including depression, and other mental and physical health disorders) actually go away!

That means at least 2 million Veterans in the United States are needlessly suffering from undiagnosed hypopituitarism. And of Veterans diagnosed with a Traumatic Brain Injury from war, the percent who may have hypopituitarism could be as high as 80%.

What is hypopitutarism? It’s when the brain is not able to send signals to cells throughout the body to control all things homeostasis. Everything metabolic. Everything that makes you human. Blood, heart, bone, and muscle function, mental health, sleep cycle, reproductive function, ability to heal and fight infection, and much more. Without these brain signals, you are always unwell, and sentenced to a life of illness and certainly an early death.

When you google “Veterans and PTSD,” about 25 million results come back. When you google “Veterans and Hypopituitarism,” only 226,000 results come back. Yet nearly half of Veterans with PTSD actually have hypopituitarism. This awareness should spread like wildfire, 2 million veterans may get their lives back.

So why aren’t they getting a diagnosis? Because doctors don’t know to look for the symptoms and they don’t know the proper tests. The only doctors who are taught about Hypopit are endocrinologists, and they are taught that it is rare. They are misinformed by their textbooks and, admittedly, due to lack of research, there is gross missing information. Hypopit patients find medical professionals actually know very little about diagnosis, testing and treatment. Often times, Hypopit patients are put on anti-anxiety pills and antidepressants, instead of the treatment they need. A bandaid doesn’t fix a bullet hole, it may cover it up for a little while, but the problem still exists. We need the textbooks to teach doctors that Hypopit is not rare and we need to teach them that anyone who has symptoms and has experienced a traumatic event should be properly tested.

2010 – A recommendation was made by AMSUS (the Society of the Federal Health Professional) for hormonal testing of veterans who sustained and sort of traumatic brain injury.

Military Medicine – “Recent civilian data obtained in those sustaining head injuries, has found a high prevalence of pituitary dysfunction. Currently, there is no data available in the military population. We reviewed the literature for traumatic brain injury (TBI)-related hypopituitarism and found that the prevalence of anterior hypopituitarism may be as high as 30–80% after 24–36 months. Since many of the symptoms of hypopituitarism are similar to those of TBI, it is important to make clinicians caring for combat veterans aware of its occurrence. Herein, we provide an overview of the literature and recommendations for hormonal testing when TBI-related hypopituitarism is suspected.” Read the full article here:

2013- Science Daily reported, “Up to 20 percent of veterans returning from Afghanistan and Iraq have experienced at least one blast concussion. New research suggests that nearly half these veterans may have a problem so under-recognized that even military physicians may fail to look for it. A new study conducted by Charles W. Wilkinson, Elizabeth A. Colasurdo, Kathleen F. Pagulayan, Jane. B. Shofer, and Elaine R. Peskind, all of the VA Puget Sound Health Care System and the University of Washington in Seattle, has found that about 42 percent of screened veterans with blast injuries have irregular hormone levels indicative of hypopituitarism.” View the article here:

This letter is brought to your attention by a woman whom believes she has a hypopituitarism, due to Sheehan’s Syndrome (SS). She has a history of a traumatic birth and many symptoms related to this illness. Not every case of SS is textbook. The textbook has missing information and misinformation, admittedly, due to a lack of research. Researchers, including Sheehan himself, admitted that the onset of hypopituitarism during childbirth is much more common than realized. Many women are forced to live with symptoms an average of 13 years before they are diagnosed. The NCBI has a journal with some Newer Advances in Sheehan’s Syndrome (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3183525/) While there is still some misinformation, it is better information than the textbooks.

The autopsies of women who died from a severe hemorrhage revealed the posterior pituitary showed no sign of atrophy, so Sheehan made an assumption in the 1930s. New information reveals that both the anterior and posterior can be damaged in cases of SS. I, myself, hemorrhaged following the birth of my son in 1998 and have been on anterior replacement for a few years. Recently, testing of my posterior function confirmed I am complete Panhypopituitary. I was tested for Oxytocin and a 24-hour urine came back at 216 in a range of 250-1300. I have since started replacement therapy. You can read my 30 day blog called Oxytocin Guinea Pig on galvanizesurvivors.wordpress.com.

The event of childbirth can cause hormone deficiencies. There can be a varying degree of damage to the endocrine system during delivery. Some cases, women have regular periods and are able to conceive again naturally. All women are different, with different pregnancies and different deliveries. They lose different amounts of blood, and handle the trauma differently. Not every case of Sheehan’s Syndrome is the result of malpractice, many events were unavoidable. (Pride and ego should have no part in the diagnosis process.)

Knowledge and proper testing are key to an accurate diagnosis. I am asking you to do the research- look into endocrine deficiencies and order the proper tests to measure every hormone of her endocrine system. I’ve had to do the research myself and fight every step of the way. It shouldn’t be like that. As her doctor, you should be qualified to give proper treatment. If she doesn’t have Sheehan’s Syndrome, there is something else going on and she is desperately seeking better health. Are you able to help her?

We need a patented drug for Oxytocin, officially regulated, tested and approved by the FDA. Three hundred and forty two clinical studies are currently under way in the United States, and more around the world. Here you are presented the opportunity to make history, and make money. There’s a huge community of people waiting for the world’s first Oxytocin drug!

We have long known about Oxytocin’s role in childbirth, but with new research we’re discovering more every day. Scientists are recording many benefits to Pituitary Tumor Survivors and Hypopituitary Patients. There’s been great success in the treatment of Autism (1) as well as Obesitity and Type-2 Diabetes (2).

We have the connection to a vast community of pituitary patients ready to ask their endo to prescribe your new drug! Many are already on the compounded nasal spray, and can easily switch. We are ready to participate in clinical trials and surveys to collect data and we know of many other patients who have expressed their interest in participating.

Sincerely,

Melissa and Adeena,
Representing Pituitary Patients

Dx: Sheehan’s Syndrome, resulting in complete Panhypopituitarism, both anterior and posterior. Rx: Oxytocin replacement since March 2015 for Melissa and October 2014 for Adeena. Both reporting significant positive results.

I’ve always been brushed off when bringing up my suspected Oxytocin deficiency. I became Panhypopituitary in 1998, when the trauma following the delivery of my second child caused part of my brain to die. It’s called Sheehan’s Syndrome, and it was assumed that the posterior pituitary, which controls Oxytocin, wasn’t affected by my illness. It was assumed but there was no research into it- either way. Nevermind the fact that my MRI showed my entire pituitary was “without mass”. There wasn’t a test to confirm an Oxytocin deficiency and it didn’t really matter because no replacement drug was available.

The truth is, not much is known about Oxytocin, even today. Word check doesn’t even recognize it as a real word! Well, there is new information. Thanks to a fellow Sheehan’s patient, I found the one lab in the world that does a 24-hour urine Oxytocin test! (Meridian Valley Lab – wesite http://meridianvalleylab.com/) I ordered the test kit with my endo’s approval, collected my urine for 24 hours, and shipped it across the country. My results were 216 in a range of 250-1300. Definitely deficient. My endo looked at the results and asked if I wanted to be a guinea pig. An opportunity to move science? YES! An opportunity to pave the way for others? YES! I will be that guinea pig.

My endo contacted the pharmacy and prescibed Oxytocin replacement for me. Felt like the longest week of my life waiting for the compounded nasal spray. I started treatment 11 March, 2015. I am on a very low starter dose once a day. I’ve decided to blog my way through this journey. I think the most important feedback for me will come from my husband and my children. My hope is that Oxytocin will help balance my endocrine system and promote better over all health; that it will be one more piece missing from the puzzle that is the endocrine system.

DAY ONE – Wednesday 11 March

I have to admit that I wasn’t looking for any effects right away. I noticed something right away tho, can’t really put my finger on it. I’m not sure. It is probably me being excited about the opportunity to start Oxytocin replacement therapy. I noticed a skip in my step on my way into to work this morning. I haven’t felt that in a long time.

DAY TWO – Thursday 12 March

Last night I came down with terrible body aches, sore throat and chest congestion. Of course! What wonderful timing my body has. Today has been spent sleeping off this nasty bug. Only thing remarkable as far as Oxytocin replacement- it is not convenient to use a nasal spray when you have a sore throat.

DAY THREE – Friday 13 March

The first part of the day was rough, but by afternoon I was feeling a bit better. My husband noted how extremely rare that is for me. Normally, even a 24-hour bug will stay with me for two weeks or longer. This one seems to be on the out already.

DAY FOUR – Saturday 14 March

Insomnia last night. Ugh. I literally laid in bed over six hours wide awake, finally fell asleep around 6am, slept lightly off and on for about 3 hours. Wondering if I need Melatonin replacement with the Oxytocin. I was going to wait until Oxytocin was balanced but I might need to start asap.

DAY FIVE – Sunday 15 March

My husband notices I am “calmer” in his words, he also said “like easier going, not as irritable.” I noticed my chronic back pain has subsided some.

DAY SIX – Monday 16 March

I do not like the smell/taste of the nasal spray. I am still having trouble sleeping. Thinking of trying melatonin tonight. Tomorrow marks one week, I think I will up the dose to two sprays, once a day. The original script was for one to two sprays, once a day. I think that’s reasonable.

DAY SEVEN – Tuesday 17 March

Melatonin (starter dose) didn’t seem to make a difference. Things I noticed today. My whole body seems more in rhythm, and I believe once I get Oxytocin to a proper level, we will need to retest and possibly change many other replacement hormones.

DAY EIGHT – Wednesday 18 March

Okay, this is not cool. Round two of the chest cold has returned. My husband’s is back too, so I don’t question my immune system being any more compromised than his. Did I mention how difficult it is to use a nasal spray with sinus congestion and a sore throat? Ugh. No new remarks regarding Oxytocin. Tonight marks the 3rd time trying Melatonin. One thing I have noticed with that, I seem to have amplified emotions for anger and sadness since starting on it.

DAY NINE – Thursday 19 March

I woke up today! I slept through the night! For years, I have laid down and fallen asleep very quickly, but never felt like I hit that “deep” sleep. Usually, I feel like I close my eyes at night and open them in the morning but never get rested. I couldn’t stop myself from smiling.

DAY TEN – Friday 20 March

Well, that sleep thing was short lived. I woke up several time through the night. I’m still fighting this cold. Oxytocin seems to be good for me, I feel like everything endocrine is more in sync. I also feel it is helping me fight the cold, I seem to be recovering just as quickly as my husband.

DAY ELEVEN – Saturday 21 March

Seriously throwing around the thought that Melatonin is not good for me. It seems to amplify anything negative. Besides, it’s hard to decipher what is going on with Oxytocin replacement when I have something else new going on.

DAY TWELVE – Sunday 22 March

Stopping Melatonin for now, I may try again later after I balance Oxytocin and after I am on ADH replacement. I am starting to shake the cold finally! Did I mention how hard it is to use a nasal spray with a cold? I have been taking extra hydrocortisone to help fight the bug. Looking back now, I wish I would have realized it was probably that was keeping me awake at night. I shouldn’t have bothered with Melatonin until after my body had become accustomed to the Oxytocin.

DAY THIRTEEN – Monday 23 March

Over the weekend I noticed a few things. I find it easier to touch people. I find it easier to mean the words I love you. I find it easier to accept and welcome touching from other people. I only woke up once last night to use the bathroom.

DAY FOURTEEN – Tuesday 24 March

I have stopped Melatonin. I have decided that I cannot make any changes to my replacement therapy until I have given Oxytocin a fair trial itself. I have noticed I am healing faster with Oxytocin. I only got up once to use the bathroom again last night, so I would say it is definitely improving my Diabetes Insipidus.

DAY FIFTEEN – Wednesday 25 March

I slept through the night again last night. Seems to be better quality sleep. I wouldn’t say it’s great but I can say it is a great improvement. I think the cold is finally gone and I am getting used to the nasal spray. The original script was for one to two sprays once a day. I am using two sprays, but haven’t noticed any changes since increasing. I am going to split the two sprays into one spray twice a day. Same dose, just dosed differently.

DAY SIXTEEN – Thursday 26 March

Changing the dosing made a HUGE difference! I noticed I had more energy in the afternoon both yesterday and today. I didn’t feel the exhaustion to which I am so accustomed. I felt positive emotions that I haven’t recognized/remembered feeling in a long time. Can’t really place my finger on them but it seems Oxytocin is allowing my endocrine system to have better rhythm and flow as one unit.

DAY SEVENTEEN – Friday 27 March

Today was a rough day. My insurance only covered a 21 day supply of Oxytocin. I have been working since Tuesday to get the next supply approved so I didn’t have any missed doses. On Wednesday, I was told that everything was in order and they would be delivering the next supply on Thursday. When the Oxytocin wasn’t delivered, I called the pharmacy to find out why. I found out that the insurance was requiring a Prior Authorization since the Pharmacy raises the price. Couldn’t get an answer as to why the price changed. Couldn’t get an answer as to why the insurance waited to the last minute to require one, when they didn’t require one last month. I spent hours on the phone, starting at 9am, between my endo’s office, my insurance company and the compounding pharmacy to find out that no one moved quick enough and, being 5:00pm on Friday, we had to call it for the weekend. I was told by the pharmacy that the soonest I could get my next supply of Oxytocin is the end of next week. What? I was devastated, I completely fell apart. I have been without for 17 years, finally get the treatment, to have it ripped from me because of my insurance company! We had dinner plans with friends that we had to cancel because the effect this had on me.

DAY EIGHTEEN – Saturday 28 March

I slept through the night again last night. Can I tell you how amazing that feels? It feels amazing! I woke up still trying to wrap my head around yesterday’s events. I realized that I only did one dose of Oxytocin yesterday, and I wonder if that had any impact on my reaction to the events. But then I realized I have to choose to be happy. No medication can make me happy. Sure they all balance together to help me feel human but I have to choose to be happy when I wake up. Today I decided that I will do just that every day for the rest of my life.

DAY NINETEEN – Sunday 29 March

Nothing remarkable today. I chose to be happy as I rolled out of bed. I may have slept through the night again last night, I don’t recall waking up to use the bathroom. I have set an alarm on my phone for 9am tomorrow morning to call my endo’s office, my insurance company and the pharmacy. I WILL have my next supply of Oxytocin before I run out.

DAY TWENTY – Monday 30 March

The Prior Auth has been submitted and is pending with the insurance company. It is on emergency status. I demanded the pharmacy start the compound, assuming it will be approved. I WILL have my next supply on Wednesday. Oxytocin is helping me in so many ways. Everything seems easier. Everything. Being happy is easier. Smiling is easier. Loving, hugging and touching is easier. Cooking and cleaning is easier. Walking and exercise is easier. My body seems to be working better overall.

DAY TWENTY ONE – Tuesday 31 March

I am still finding out what exactly Oxytocin does for me. I know the current research only reveals a small part of what this hormone’s role in our bodies. I find myself singing happy songs and dancing around. I find myself running up the stairs, and even taking two at a time. I am having dreams and sleeping better. Even on this low starter dose, the benefits keep showing, new ones every day!

DAY TWENTY TWO – Wednesday 1 April

I noticed one new thing. today I seem to handle stress better and need less hydrocortisone on the “bad” days, and the recovery time after illness and bad days seems shorter and easier. They messed up my new prescription. I will not be able to increase my dose, and may have to decrease to make this last to the next fill. Ugh. I’m really anxious to get to the proper long term dose so I can feel the full effects.

DAY TWENTY THREE – Thursday 2 April

Hold onto your shorts, I’ve developed a theory. I’ve often heard the pituitary described as the ignition (like as in an auto engine.) My theory is that Oxytocin works as the belt in that engine (endocrine system), making all the components work properly. The pituitary starts the belt, Oxytocin runs through the endocrine system, making each organ function as it should.

DAY TWENTY FOUR – Friday 3 April

I realized today that I haven’t felt my chronic back pain in over a week. That is such a great feeling. My chronic back pain started about 6 years ago. I noticed a difference right after starting Oxytocin. I also had a depo-medrol injection. I believe the two worked together for a common goal. I wouldn’t call Oxytocin a miracle drug but I will say that it is vital.

DAY TWENTY FIVE – Saturday 4 April

I am sleeping through the night almost every night. That is rare with my diabetes insipidus. The Oxytocin seems to be improving the symptoms of my ADH deficiency. I am having dreams, I think every night. I haven’t had dreams in a long time. I would have them every once in a while. Now, I kinda feel crazy when I wake up from a dream. The funny thing about that is dreaming is normal…

DAY TWENTY SIX – Sunday 5 April

I am feeling more rested and my body seems to be more in sync. I am finding it easier to be happy and enjoy things. I feel myself slowing down and living in the moments.

DAY TWENTY SEVEN – Monday 6 April

I understand why researchers call Oxytocin the love hormone or the cuddle hormone. Hugging, kissing, simply loving and saying I love you is easier when you have more Oxytocin. I’ve noticed an increased desire to be around people. I’ve noticed myself desiring hugs and contact with others. I’ve noticed myself touching more and expressing my love more. It wasn’t that I didn’t love before, I think it was just harder to show.

DAY TWENTY EIGHT – Tuesday 7 April

Nothing remarkable today, but I have a thought. When we put researcher’s knowledge of the molecules with our experience as “Oxytocin replacement guinea pigs” we pave the way for Oxytocin to be added to hormone replacement therapy for all deficient patients.

DAY TWENTY NINE – Wednesday 8 April

One thing I’ve noticed but don’t think I’ve mentioned yet. The only negative thing I’ve noticed lately. I’m not sure that Oxytocin is even responsible for it. I’ve had an increased appetite lately. I’m hungry all the time. When mealtime comes around, I am insatiable. It sucks, I hope it’s not related and tapers off soon. I need to commence beach body, not eat more and gain more!

DAY THIRTY – Thursday 9 April

I see my endo tomorrow. I am excited to tell him the things I have noticed. I am also excited about increasing from my starter dose. We will need to remeasure all my hormone levels to see if Oxytocin is affecting anything. I am grateful for the opportunity to try Oxytocin. I believe it is vital to the entire endocrine system. I am thankful that a deficiency test is finally available. If you are hypopit or PHP I strongly recommend you order the test and rule out or confirm a deficiency. I am happy that my endo was on board with replacement therapy. If you are found deficient and your endo isn’t on board with replacing, I strongly recommend you find a new endo. I am excited to see what else I will notice as I increase to a good level. I guess being a guinea pig isn’t all that bad!